Chronic kidney disease (CKD) support: Introduce yourself and connect

@rotate It could be just that. Keep an eye on it all, and trust your gut.
Ginger

@gingerw You bet. Meanwhile, I'm a bit restricted on medications (i.e. cut back on NSAIDS). Grumble 🙂

Nice to meet all of you!

Thanks to a connection between my HMO and the Mayo Clinic, I was diagnosed with Immunotactoid Glomerulopathy (ITG) in 2021 when my PCP noticed that my creatinine was creeping up. After a gazillion tests, I had a kidney biopsy which was sent first to the Hennepin County Medical Center (for lack of a needed test reagent at the HMO) and then to Mayo (for the same reason). I know now that I have the idiopathic version. Only about 100 people in the world have ITG and I am thought to be one of only 10 with the idiopathic version. Seventy percent of ITG patients also have lymphoma. Their ITG responds to effective lymphoma treatment. Thirty percent also have myeloma. Their ITG is better when their myeloma is better.

I was tested for both and eventually received a lymphoma treatment (Rituxan) which failed. Next I was treated for myeloma. No myeloma has been found yet but the ITG responded enough so that two years later my Mayo nephrologist/hematologist suggested I might be in remission.

One of the hallmarks of ITG is high proteinuria, which I have. The decisive, diagnostic test for ITG was an electron micrograph which shows many cylindrical deposits of IgG1 with lambda chains--apparently a rare combo for ITG. It is not yet known if those deposits will ever get smaller but they interfere with my kidneys' ability to filter.

From my perspective, the worst side effect came from the 2021-2023 treatments which have left me immunocompromised. This summer, I tried getting out more (I haven't been to a family gathering since Christmas 2019 because of all the toddlers and primary school kids that have joined) but I got endless colds. The worst lasted five weeks instead of the two weeks my husband had what we think was the same strain.

I wear an N95 respirator whenever I go into a public building. We have successfully attended orchestral concerts, chamber music recitals and, starting this spring, I have gone grocery shopping in person sometimes. I'm still relying on grocery pickup and home delivery. But, we have successfully enjoyed three trips to HI (each one thought to be the last) and a handful of trips to visit our son and his family in NC. It's fun to see the two grandkids, 3.5 yrs and almost 2. They came to visit last summer and brought hand, foot and mouth disease from daycare. To my amazement, I didn't catch it.

My kidney disease is complicated by also having gout and pseudogout.

I am a chemist and can understand the conclusions sections of medical journal articles. The most distressing one reports that ITG patients only live 3-5 years after starting dialysis. After my diagnosis, my nephrologist (who said he'd never heard of ITG) told me that I'd be on dialysis in about three years. I'm a bit more than four years out from that appt. My creatinine is down to 0.86. Apparently that puts me a Stage 2 but the proteinuria criterion puts me at Stage 3. There aren't enough idiopathic ITG patients to make a definitive Stage assignment. But I'm not on dialysis yet. (Knock on wood.)

@mi have stage 4 kidney disease. Efr is27 & is currently stable. I also hv diabetes, ,high blood pressure & heart failure. All currently being treated by Drs. Yes I know diet, exercise are helpful. Adequate sleep & also hydration. I just don’t know how to make the efr higher . Any suggestions are helpful. Oh, sorry, don’t know what caused the kidney issue!!

@golfmama1 Seeing that you are being treated for both diabetes and high blood pressure, either one or both of those could be contributing factors to your kidney disease. Being very vigilant about diet, being medication compliant, will be helpful. Have you had the chance to look at renal diets and what other members are doing for their food programs?
Ginger

I haven’t seen any renal diets & hv ckecked with comments from others! It’s been interesting & I enjoy them. It makes me feel like I’m not alone in my tryin to get a better hold on my kidney disease.

@golfmama1
From the National Kidney Foundation: https://www.kidney.org/kidney-topics/nutrition-and-kidney-disease-stages-1-5-not-dialysis
From Renal Support Network: https://www.rsnhope.org/nutrition-data-information-for-the-kidney-diet/

Both of these will give you lots of information and may help you formulate what will work best for you. Will you give them a look?
Ginger

Thank you Ginger, I will look at both sites. Thanks forthe information.

I'm just starting to deal with my CKD, which started gradually but now is getting worse. I am trying to educate myself on how to manage this and maintain a positive attitude.

Along with a kidney diet you need to watch your numbers from blood work ups. They go hand in hand on how to control the disease. Bess wishes.